Planning for when you’re gone

Parent-to-parent guidance, not legal or financial advice. Nothing below is a substitute for an attorney licensed in Tennessee.

Start with the person, not the paperwork

Before any document exists, answer the human question: who? Who would your child live with. Who shows up at the IEP meeting. Who knows that the blue cup matters. What parents learn the hard way here:

• Ask them out loud, in advance. A name in a will that nobody discussed is a name that can decline.
• Name backups. First, second, third. Siblings age, marriages change, health changes.
• The caregiver and the money person can be different people — and often should be. The aunt who is wonderful with your child may not be the right trustee, and saying so protects the relationship.
• Write down what “yes” means. Weekend visits now? Guardianship later? Managing services from another state? People say yes to a feeling and later discover they agreed to a job.
• Revisit every couple of years. This plan has a shelf life, like a car seat.

Why you can’t just leave them the money

This is the part that catches loving families completely off guard. SSI limits an individual to $2,000 in countable resources — a threshold that hasn’t moved since 1989. Going over it, even briefly in one month, causes ineligibility for that month. And because SSI eligibility often carries Medicaid with it, losing one can mean losing both.

So a $30,000 inheritance left directly to your disabled adult child doesn’t make them $30,000 richer. It makes them ineligible, the money gets spent on what insurance used to cover, and then they’re back where they started with a safety net to re-apply for. If money does land in their name unplanned, the options narrow to damage control: spend it down within the same calendar month, suspend benefits, or shelter it in a first-party trust with a Medicaid payback attached.

Special needs trusts, in plain English

A special needs trust (SNT) holds money for your child without it being theirs in the eyes of SSI and Medicaid. A trustee spends it on things that improve their life beyond what benefits provide. There are two kinds, and the difference matters enormously.

Third-party trust — what most parents should be setting up

Funded with money that never belonged to your child: your estate, life insurance, a grandparent’s gift. This is the one you build into your own will, in advance.

No Medicaid payback. Whatever is left when your child dies goes where your family directed it — to siblings, to a charity, to whomever you named. Nothing is clawed back. It’s also the address every relative can point their giving toward, which solves the grandparent problem permanently.

First-party trust — for money that’s already theirs

Funded with the beneficiary’s own money: a personal injury settlement, back pay, or an inheritance already in their name. Sometimes called self-settled or “(d)(4)(A).”

Medicaid payback is required. When your child dies, whatever remains must first reimburse Medicaid for what it spent during their lifetime before anything passes to other heirs. A genuinely useful tool for cleaning up money the person already owns — and the payback is exactly what planning ahead avoids.

Ask your attorney which one you need, who serves as trustee (an individual, a professional, or a pooled trust), and what happens if that trustee dies or steps down.

Where ABLE accounts fit

An ABLE account is the simple, low-cost companion to a trust — owned by your child, something like a 529, and no attorney required.

• Up to $100,000 doesn’t count against the SSI resource limit. Above that, SSI cash payments can be suspended, though Medicaid generally continues.
• Eligibility turns on age of onset: the disability must have begun before age 46. That threshold was raised in recent years, so a “no” your family got a while back may simply be out of date.
• Contributions in 2026: $20,000 a year from all sources, plus an ABLE to Work contribution of up to $15,650 for an owner who works and isn’t in an employer retirement plan.
• Use both. ABLE is cheap and flexible but capped; a trust has no ceiling but costs money to run. Families who plan well usually end up with one of each.

How to open one in Tennessee: our ABLE TN guide.

The letter of intent — the document only you can write

This one isn’t legal — no attorney, no notary, no court enforcement. Special needs attorneys still treat it as the essential companion to the trust, because it carries what legal documents can’t: who your child actually is. Write it in your own voice, in plain language, and cover:

• Family history — the people, the story, who matters and why
• Daily routine — foods they’ll eat and won’t, the shows, bedtime, the exact order of the morning
• Medical — doctors, therapists, medications, what a bad reaction looked like, what actually helped
• Communication and behavior — how they tell you they’re in pain, what a meltdown means, what calms it and what makes it worse
• Education — what has worked in school and what hasn’t
• Employment preferences and the kind of work that suits them
• Living arrangements — where they’ve lived, where they are now, what you hope for later
• Social relationships and recreation — friends, interests, the things that make an ordinary day good
• Local resources and agencies already in play — who to call for what
• Your hopes for their future — the closing section, and the one people read twice

Don’t write it in one sitting. Open a document, do the food page tonight, add to it, and update once a year — birthdays are a good anchor. A framework: the Special Needs Alliance on letters of intent

Who decides, and how much gets taken away

At 18 your child is legally an adult regardless of support needs, and families are often told conservatorship is simply what you do. It isn’t. There’s a spectrum, and Tennessee courts must look at the least restrictive end first.

• Supported decision-making (SDM) — your young adult keeps every right and chooses trusted people to help them think decisions through. Honest Tennessee caveat: Tennessee has not passed an SDM statute the way some states have, so an agreement here is an informal written document, not filed with a court, transferring no legal authority away from your child. What Tennessee did do, in 2018, was write “least restrictive alternatives” into the conservatorship law — courts are expected to consider options like this before removing rights.
• Power of attorney and health care documents — targeted authority your adult child grants voluntarily, without a court stripping anything.
• Conservatorship — a court removing specific rights and assigning them elsewhere. Sometimes genuinely necessary, but a fitted-to-need last resort rather than a default, and as narrow as the situation allows.

Tennessee has an unusually good free resource for this exact decision: the Tennessee Center for Decision-Making Support at tndecisionmaking.org, run jointly by The Arc Tennessee, the TN Council on Developmental Disabilities, and Disability Rights Tennessee — plain-language explainers, a self-assessment tool, and staff who will talk it through one-on-one and refer you for legal consultation: (615) 248-5878 ext. 322 · ds@thearctn.org.

SSI at 18 — the moment the math changes

Two things happen around the eighteenth birthday, and together they make this a moment to act rather than drift.

Your money stops counting. While a child under 18 lives at home, Social Security “deems” part of the parents’ income and resources to them — which is why so many working families are told their disabled child doesn’t qualify. Deeming stops the month after they turn 18, and only your young adult’s own income and resources count from then on. Families denied years ago should apply again. (A narrower rule also waives parental deeming for some children whose Medicaid comes through a state home-care plan — worth asking about if your child is on Katie Beckett.)

The disability standard gets harder. Within a year of that birthday, SSA runs an age-18 redetermination — not a renewal, but a fresh decision using the adult standard, without deference to the childhood determination that’s been in place for years. It blindsides families. Go in with current, adult-framed documentation: recent evaluations, functional descriptions of daily life, records that speak to what work would actually require. If benefits stop, ask SSA about the appeal process at the time — there is one.

The 2026 maximum federal SSI payment is $994/month for an individual ($1,491 for an eligible couple), reduced by countable income. Apply at ssa.gov/ssi, by phone at 1-800-772-1213 (TTY 1-800-325-0778), or at a field office. The rest of what shifts at this age: our teens and independent living guide.

If you do nothing else this month

1. Say the names out loud

   Write down your first, second, and third choice of future caregiver — and call the first one this week. Everything else here is easier once that conversation exists.

2. Send one text to the grandparents

   “Please don’t leave anything directly to her — I’ll tell you where it should go once our attorney sets it up.” That sentence has saved families more money than any document on this page.

3. Start the letter of intent tonight

   One page: foods, routines, what calms them. It’s the only part of this plan nobody else can write, and the part your child’s future people will read most.

4. Book the attorney, open the ABLE account

   Use the Special Needs Alliance Tennessee list and ask what a third-party trust and a will cost as a package — plus whether they’ll review your existing beneficiary designations. While you wait for that appointment, open the ABLE account; it takes an afternoon.